Hey guys, so I've recently been diagnosed with Coeliacs Disease. Ever since the diagnosis I have been on a strict GF diet... however, I think I may have finally been caught out! From yesterday afternoon I began feeling very sick, had sharp pains in my stomach, terrible back ache and constant burping. I had similar symptoms a couple of months ago but I put that down to consuming too much dairy (I have been having soya since January). The mystery to me is, what could I have possibly eaten to cause these very unpleasant symptoms? This lasted all last night and I'm still feeling drained from it today. I ate some wheat-free bread on Saturday evening (I'm guessing a mistake?!) and have started eating Juvela GF savoury biscuits since Monday... everything else I have been eating is the same. I have had an upset stomach since Sunday but thankfully that stopped yesterday. Any help or advice anyone could give would be so much appreciated! I'm scared of eating anything now!!
Hi, You have to read every label, you could have eaten a product that has gluten in it eg. stock cube in a meat dish or wheat under another name???? I became lactose intolerant after I went gluten free it gave me the same gut problems as with wheat, check check & check again, If you are eating out be extra careful as people don't always understand or sympathise with your particular problem. I once had a hotel manager tell me it was "all in my head" needless to say he was told off !!!! Don't assume that people know.....they don't. I have also been in cafe's where I have checked that the soup was gluten free and then be served that same soup with a bread roll .....duh.!!!!....It may also be your soya some people can't do with it. .
P.S. If you wear specs don't go shopping without them. If you go to Tenerife on Holiday I can thoroughly recommend the Las Dalias Hotel, they seem to be reasonably well clued up on Coeliac & lactose intolerance, tip learn some spanish before you go. Good luck
Thank you very much for your helpful reply 
I will try to be a lot more vigilent!! It's such a bore but something that we all of course have to just get used to or we pay the heavy price! Thank you again
I'm newly diagnosed and very weary of labels, I see that your reply says about watching out for products with another name for wheat, what is the name?
I'm struggling a bit, I bought some crisps yesterday which didn't have any signs of gluten in the ingredients, but I'm still weary at the moment and scared of buying products with gluten in. Confused. Com
Hmm be VERY careful of crisps... most crisps do contain gluten even if they do not say so in the ingredients... this is mainly due to what the potatoes are cooked in and the risk of cross contamination. Tyrells crisps are definitely safe and very tasty Beware of aliases like flour, bulgur, semolina, spelt, frumento, durum (also spelled duram), kamut, graham, einkorn, farina, couscous, seitan, matzoh,matzah, matzo, and cake flour. Often marketed as a “wheat alternative,” none of these is even remotely gluten-free. I would go and speak to your doctor who will tell you that you are eligable for free gluten free food every month... trust me.. it's a life saver and a bank saver! To buy gluten free bread/pasta/flour etc costs so much... but by getting it every month for free is just fantastic! Have a look on coeliacs uk website and google for some recipes.. it seems really overwhelming at first but I promise you'll be ok and the healthiest person ever!
Where can you buy these crisps from? I really think I need to write a list of these names down until I get used to it. I can't wait to feel better. I've got my biopsy on Saturday, my endomysial antibodies are positive and my IGA levels are > 250, so I don't think the biopsy will be negative.
Ah best of luck for the biopsy! It sounds like you will get a positive result. Tyrells crisps you can just get from your local supermarket you will probably recognise them.. they even sell them at pubs. The vegetable crisps are the best!
Thank you for that, I think I need my own personal dietician for a few months lol. I've got a mission to find these crisps now 😊
Oh, yes - in the U.S. we are quite jealous of your monthly stipend for GF food and staples! Also, if there is a support group or referral service, see if you can network with others who have CD.
Even if you shop in a health-food store or similar venue, ask around about safe restaurants in the area and what to look for or avoid based on others who have done this longer and know what they react to. Those with CD are fairly small in number, but you'll find more in certain places (like businesses that cater to healthy foods). Or a friend may know someone to put you in touch with.
Still, diligence is key. It will get easier, I promise! Keep your diet simple for now and then add in as you go along. I do not have CD (due for testing next month to be sure) but my 7-year-old son does. Once his brother was tested (and was clear), we threw out everything and started over, including much of our cookware (it had ridges inside), toaster, etc. It's trial and error, so that does mean error, but it's minimal if you do your research. U.S. food label laws changed over the summer, so that was a tremendous help for us. Anything with wheat has to be labeled (still doesn't cover all sources of gluten, though) and now most major manufacturers and the health-conscious ones, too, include a statement that says, "Processed with...." and if wheat is part of that line, we know to avoid it even if it's not an actual ingredient. Easiest when there's a nice big GF symbol by a third-party agency to certify!
Oh, and we don't eat out much and no take-away unless it's a certain type of pizza place with GF pizza handled just the right way.
As for dairy, generally once your gut has healed on a GF diet (varies but after a few months in general), dairy should be "safe" again. Lactase, which breaks down lactose in milk/dairy, is produced in the lower portion of the villi. When yours are damaged from CD, you lose the natural ability to digest this sugar and problems ensue. When the villi return, they're once again able to produce the lactase enzyme. Some people may be intolerant for other reasons, but generally those who lose lactase can gain it again. In my son's case, we gave him lactose free dairy (cheddar cheese for example, as it's production gets rid of lactose) or a Lactaid pill with the enzyme he'd need if he drank milk, had butter, ate GF pizza, etc. After 4 months he stopped the pill and he's fine ever since.
I hope that helps!!
Thank you, that's great. It's going to be a challenge at first but I'm sure I'll get used to it, anything has to be better than feeling as ill as I do at present. I keep finding new information all the time. I think the GP's over here need some re-educating on coeliac disease and ALL the symptoms not just text book, I've been going backwards and forwards with my stomach for god knows how long to be told it's probably your IBS. A doctor then sees me out of hours as I was in so much pain and says you need testing for coeliac disease, he had never met me before. I've also got a feeling there will be quite a bit of damage with my blood results , but as long as I know I'm going to get better 😊
Thank you so much for your extremley helpful reply! I really appreciate it!
It can be a bit overwhelming at times but hey it could be so much worse! It's just when you have accidentally had gluten and pay the price that you start to hate your gut once again! Best of luck for your test, at least you are 100% prepared for it fingers also crossed for the US getting free monthly GF food! No one should have to pay more for something that they have to have for health reasons, it's outrageous!
Best of luck and thank you so much again.
It was the same for me too 
I was given the run around and they suspected it was just IBS. As long as you are vigilent and keep going back (of course you shouldn't have to do that... they should do the tests much sooner!) then it will get diagnosed and sorted. Don't cut the gluten out until you've had the biopsy though as it may make it harder to find. Such a pain I know!
Hahaha, if you've ever heard the term "Obamacare" you can guess that we're not likely to have any further socialization of medicine here - so much for GF prescription!! I used to be budget-conscious when I shopped and now I don't think twice about paying for what we need. It's hefty, to be sure, but it's my little guy's health at stake!
Oh, another thing that will help...get a VERY sympathetic friend!! You'll want to whine and vent because let's face it, this stinks. If it's not CD and "just" an intolerance, it's still life-altering. It gets better, but the transition is really no fun! And, you'll want a friend to go to the small number of places where you'll be able to eat. My son's best friend's mom really "gets it" and even makes "safe" cupcakes for MY kid when it's HER son's birthday! Small, but wonderful support!
Haha noted! If one more person says to me 'oh so you can't eat that either? Omg I don't know how I'd live without it!' they will get a metaphorical slap!
Yeah my parents have said that I really need to just accept that I'm going to be spending more on food now... it's ok... it means one can get extremley creative with cooking! Always a pain when going to relatives or friends house though... they never mind but as I'm someone who used to eat EVERYTHING it can be a bit tricky now! They need to get the ole recipe books out 
That sounds wonderful about your friend that makes the cupcakes... I need to find someone like this! It's been an age since I've had sweet treats... I've never been so healthy!!
I thought we had to pay for the prescriptions of gluten free food in UK.
Nope, it's completely free we are entitled to it if we are diagnosed with Coeliacs Disease.
Oh right I thought we had to pay a prescription charge for each item, ice just paid for a pre payment card so it didn't cost as much 😞
Ah well that will still be useful for you in the future.. but now that is one of the good things about having CD. Free monthly food!
You might find it worth joining Coeliac UK. This organisation has a data base of 'safe' products and also has a smart 'phone app which allows a user to scan the bar code of a product and get a response to indicate whether or not it is safe - I have to add that I have yet to try this myself.
My own experience is that there are many occasions where it is not obvious whether a product is actually gluten free. Even simple things can catch one out, I recently made an impulse purchase of some liquorice and only found out that it contained wheat products after eating half of it!
Hi there
Sorry you hear you have problems. I had a few when I was first diagnosed. The Juvela should be fine. Wheat free bread may be the culprit if it is not gluten free. Have you joined the coeliac society ? They send you the GF bible with a list of all GF products. If it's not in there it is not safe.( unless it's a new product and is clearly marked gluten free.) I found this invaluable in the early days although I tend not to get the updates every year these days.
Hope that helps
Good luck